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Author
Topic: So I'm staring at a prescription for Atripla... (Read 8695 times)

...423 CD4, VL 80,000, doc says he thinks I must've been infected earlier than 2.5 months ago, maybe my neg result in sept 09 was a "false negative". He wrote me a prescription for Atripla. I pointed out that my WB in early June came back "indeterminate". Resistance test has not come back yet. No idea what a "phenotype" is but that hasn't been discussed with me either. I don't know if 423 is going to be my set point, or if CD4 is still climbing as I'm still fairly recently over my presumed conversion. I'd decided to start as soon as I showed a "sustained drop below 500", and think its asking for problems to start before I get my resistance test, but this is a scary-low CD4 compared to what I was expecting. How long does it normally take for CD4 to reach a "set point", and is it really as bad of an idea as I think it is to start meds THIS early? Thanks for the input everyone!

the phenotype will give you and your doctor a profile of how your specific virus "reacts" (susceptibilty) to the different/existing meds.

Your CD4 is Ok, but it is (in my opinion) a fine point to start meds --I was at 425 or so when I did. It is in no way a "bad idea," especially based on what the latest research and guidelines seem to indicate. There is no magic formula as to how soon or when your CD4 will "stabilize." It is all about trends and time. Patience, patience, patience.

So... quit staring at them pills and just pop one of them. Go to bed without fears of side effects. If you feel a bit odd the first couple of days you will see how it goes away in a week or two.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

I also agree --The first night is the most difficult - at least it was for me, because I didn't know what to expect... but just take it, go to bed shortly after and it will be alright --I've had very little side effectsand the benefits have been out of this world - seriously --- literally saves peoples lives

I started meds before my genotype and phenotype results came back. Fortunately there were no resistance issues, and my lovebug is sensitive to all the current meds.

The "worst" that could happen, if any resistance was to be found, is that a new line of treatment would need to be addressed. But you are worrying about this before it even happens.

You can wait a couple more days if you like (when will your genotype results be back?). These are decisions that only you can make. As you see from what others have told you, and from what many forum members taking the same medication that you are about to start have experienced, there is no need to panic.

Good luck and health.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

I would wait for the resistance test results first. The reason is that if you begin a regimen with a component that your virus is resistant to, it can lead to resistance to the other two components also.

One of the most common mutations is a resistance to the Sustiva component of Atripla. It's why I was not given Atripla. The other two components, separately or combined as Truvada, are mainstays of most regimens. It's worth the wait to ensure you preserve those options.

Also I would want at least one more lab test before beginning, to make sure the numbers aren't the result of some anomaly or lab error. They're good enough now that you can wait another month or two. But a similar result would mean it's time to start popping pills.

...423 CD4, VL 80,000, doc says he thinks I must've been infected earlier than 2.5 months ago, maybe my neg result in sept 09 was a "false negative". He wrote me a prescription for Atripla. I pointed out that my WB in early June came back "indeterminate". Resistance test has not come back yet. No idea what a "phenotype" is but that hasn't been discussed with me either. I don't know if 423 is going to be my set point, or if CD4 is still climbing as I'm still fairly recently over my presumed conversion. I'd decided to start as soon as I showed a "sustained drop below 500", and think its asking for problems to start before I get my resistance test, but this is a scary-low CD4 compared to what I was expecting. How long does it normally take for CD4 to reach a "set point", and is it really as bad of an idea as I think it is to start meds THIS early? Thanks for the input everyone!

First of all, why does your doctor think you must have been infected earlier than 2.5 months ago? Is it because you do not have the rampant VL associated with very recent sero-conversion?

I won't say whether I think you should start meds this early, but here are a few factors that leap to mind:

1. The range of t-cell counts that will be normal for you can be quite large. Look at my labs below: they bounce around from a low of 547 to a high of 825. You have no idea whether your current 423 represents the high end of your spectrum, the low end, or something in the middle. I personally would want to see at least three lab test results come back before I made a decision; only then would I feel that I was deciding based on my over-all situation, and not on a snapshot of one moment that might very well not be representative. Even two tests could be abberations. Obviously I would not say this to someone who had 50 t-cells, but someone with borderline numbers such as yours can afford to wait.

2. The eight months or so after sero-conversion were quite rough for me. I got infected in July. Throughout October I had flu-like symptoms, and in January I felt a bizzare kind of fatigue. Then in February there was diarrhea that lasted for two weeks. By the end of Feb. things started to improve, but there was a string of random, brief illnesses throughout that Spring, and finally one occuring as late as October, fourteen months after I got infected. There then followed more than five years without so much as a cold, and with the numbers you see below. I'm really glad that I didn't get tested and get CD4 counts during that first year because, judging from how I felt, I might have had pretty bad numbers.

The fact that you had an indeterminate test result means that you were still in the process of seroconverting when that test was done. You were probably infected 2-3 weeks before that test.

Frankly, I think you'd be stupid to start with those numbers when you're only recently poz and have only that one result to go by. They're excellent numbers for this point in your infection - a low VL for early infection and a high CD4 for the same. You've been active in that other "when to start" thread so I'm not going to go into further details.

Obviously, it's up to you. But you can - and in my opinion - should wait for more results. For all you know, in three months time you could have 800 CD4s and a VL of under 10,000. It wouldn't surprise me going by your current numbers.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Wow, I can't believe your doc would give you drugs so fast with limited information...

If I remember correctly you and I are newbies to this around the same time, I tested neg in June of 2009 and poz in early June of 2010. I did my first labs 12 days ago, it only took 1 week to get them back. CD4 were 307 - VL 9500 - 18%. The numbers sort of freaked me out so I went in the same day and had them draw more blood and start my genotype. (They tell me that will take two weeks, so I've got at least another week to wait for that.) Like many have said here they want to do at least one more set of labs before we do anything because they don't really have any data to know where I started at and I may be at my "low".

Like you I had made up my mind that if my numbers were below 500 I'd want to start meds, but since they are below 350 I'm for sure going to do it. Sure 307 might be might be my low point but even if they bounce back up by 200 it would still put me at the 500 I was ready to commit.

If it were me I'd wait for another set of labs and the genotype results... Seriously your numbers rock compared to mine and I'm going to wait for another set before I jump in. We're not going to suddenly get sick and die, wait another few weeks and make sure Artipla is the right drug for your bug.

I'm sure meds are in my very near future but I want to know any resistance issues before I start popping pills.

Thanks for the replies everyone. I would have responded sooner, but my internet connection was down and I didn't want to type everything out through my cell phone. Obviously I haven't begun treatment yet. I'd normally jump, being that my CD4 are WELL below where I'm comfortable, but the possible issues created by a resistance to one of the components of ATRIPLA FAR outweigh the possible benefits of starting NOW vs a month from now when I get back the results of that test. My response to him was that I wanted another CD4 result, and I wanted the results back as soon as I had my resistance test back so that I could make an informed decison. He was very good about accomodating that, saying that he was comfortable with me waiting. As for my "percentage"...I have no freaking idea what that is, and it hasn't been mentioned to me. A brief summary would be much appreciated . Overall, I think he's a very good physician, and there is somewhat more to the conversation than I can put into words here, but I am considering seeking a second opinion. Does he need to know about this, and if so is there a diplmoatic way to accomplish it? I'd like to retain the option of having him as a physician for the long term, but feel a need for a second opinion. He's an ID doc, but is not an HIV specialist and honestly, I question the quality of care a non HIV specialist can give me.

I have a few more questions:

As I understand it, CD4 levels plummer during initial HIV infection, sharply rebound, plateau and then eventually fall. Is it reasonable to hope that 2 months after my conversion (the time of the test) my CD4 levels might still be rebounding, or is this seriously the number I've got? Thats a scary, scary low level. I was administering a cortisone shot in my rear at the tail end of my conversion illness, and I know that cortisone wreaks havoc with CD4 levels. is it possible this permanently lowered my CD4 levels, or has kept them artificially low for a while?

Is there a natural way to increase CD4 levels? I'm not talking about magnetic therapy or exotic asian herbs, but suerely SOMETHING I'm doing affects them, and I'd like to improve this. Vitamin C? A high protein diet? Should I lose weight?

Is there a natural way to increase CD4 levels? I'm not talking about magnetic therapy or exotic asian herbs, but suerely SOMETHING I'm doing affects them, and I'd like to improve this. Vitamin C? A high protein diet? Should I lose weight?

Nope. The only way to increase your CD4 counts is to neutralise the thing that's causing them to decrease.

So conversely there's no way to hurt them? Like, I can start drinking every night?

Every night? Sure! Your CD4 won't drop, but I'm sure that your liver will thank you for it.

In the process make sure to pick up a couple of bottles of heavy-duty poppers and start eating twinkies and pukedonald's six times a day. You will look fabulous in just a few weeks.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

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Recently, researchers have found that moderate red wine consumption may be beneficial to more than just your heart. One study found that the antioxidant resveratrol, which is prevalent in the skin of red grapes, may inhibit tumor development in some cancers. Another study indicated that resveratrol aided in the formation of nerve cells, which experts believe may be helpful in the treatment of neurological diseases like Alzheimerís and Parkinsonís.

your tcells are part of your immune system, you can "help" your immune system by eating right, exercising, and reducing stress. You can hurt it by doing the opposite. But there's no magic bullet or medicine to boost your tcells.

But there seriously hasn't been a strong correllation drawn between T cell hikes and, say, body fat ratio? Or cardiovascular activity? It seems like there should be specific things I should be addressing here, in addition to going on meds. And Does anyone know how long it takes for the "bounce" after acute infection to take usually?

I have a friend who's a LTslowP and had a hardcore glass stem meth addiction for five years, and his cd4s stayed relatively constant.

It's all hit or miss. If it's in your DNA it's in your DNA.

Do you honestly believe that? Understand, from my vantage, it seems so...counterintuitive. Biology may be the ultimate determinant, but its so hard to comprehend that NOTHING about the way I treat myself makes a difference. I've never heard of anything else in health science where drugs and biology alone are viewed as the determinant of an outcome. I'm not one of those people trying to replace HAART with vitamins, but I cannot believe my CD4 levels exist in a vacuum which is penetrated only by HIV.

Do you honestly believe that? Understand, from my vantage, it seems so...counterintuitive. Biology may be the ultimate determinant, but its so hard to comprehend that NOTHING about the way I treat myself makes a difference. I've never heard of anything else in health science where drugs and biology alone are viewed as the determinant of an outcome. I'm not one of those people trying to replace HAART with vitamins, but I cannot believe my CD4 levels exist in a vacuum which is penetrated only by HIV.

Simple stuff though probably, but in extreme examples -- such as if you eat fast food everyday or are only getting five hours of sleep routinely. Most people don't do that anyway.

You could always start by lowering stress, but that would involve not being a nervous wreck. Easier said than done after a new diagnosis though.

Aside from that don't you think that 30 years into HIV someone would have clearly sorted this topic out? Well, guess what, they haven't because there's no simple answer no matter how much you wish there was.

Simple stuff though probably, but in extreme examples -- such as if you eat fast food everyday or are only getting five hours of sleep routinely. Most people don't do that anyway.

You could always start by lowering stress, but that would involve not being a nervous wreck. Easier said than done after a new diagnosis though.

Aside from that don't you think that 30 years into HIV someone would have clearly sorted this topic out? Well, guess what, they haven't because there's no simple answer no matter how much you wish there was.

Well yeah, that was precisely it. 30 years into it, I would've thought someone would've sorted this topic out.

Thanks for taking us back to point Matty. And I agree, it would be way too early to start meds.

Anyone else have any ideas for how I can search out a new docs option fast? Without burning bridges? I asked for a copy of my labs from my doc. I don't think he gave them to me. Don't wanna repeat them. Also, does anyone know why its taking so freaking long to get my genotype back? Six weeks is f***ing absurd! It also took forever to get in to see this guy.

I agree about waiting for your results to come back in before starting the Atipla. As for finding another ID doc, have you tried going to your ASO? They may be able to point you in the right direction.

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Diagnosed July 28th 2003

'I don't want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.' -Diande Ackerman

'Why not go out on a limb? Isn't that where the fruit is?' -Frank Scully

On the other issues:It seems odd that your doctor is not waiting for a resistance test. Your numbers don't show that there is any immediate danger of waiting til you have all the info before starting. On the contrary...

Thanks for taking us back to point Matty. And I agree, it would be way too early to start meds.

Anyone else have any ideas for how I can search out a new docs option fast? Without burning bridges? I asked for a copy of my labs from my doc. I don't think he gave them to me. Don't wanna repeat them. Also, does anyone know why its taking so freaking long to get my genotype back? Six weeks is f***ing absurd! It also took forever to get in to see this guy.

Okay......

1. Calm the f*ck down. Chances are better that you are normal then not. Nobody becomes poz and plummets off a cliff. It just doesn't work that way. Stop watching so many lifetime movies and hollywood dramas. HIV is not attack of the THING.

2. Please do not second guess your doctor on the basis of this forum. If you legitemately do not want to start meds, gather info from here and have a conversation. I'm not a doc, but I can imagine nothing is more annoying than a non-compliant patient.

3. Resistance. Atripla is a well tolerated, very effective med. In the odd chance that it doesn't work for you your next test will show no reduction in viral load at which point it's time to try something else. HIV meds are sort of like a family reunion where you have to dance with one of your aunts. Each aunt has something peculiar about her.... so one has gas, one has arthritis, one talks constantly...etc you get the idea? None of them are ideal, but you've gotta do your part. Atripla is your Aunt with the fewest bad habits. It doesn't glue your ass to the toilet, cause you to be photosensitive, zap your appetite, evaporate your sex drive, or any of the other nasty habits that some of the drugs have. Trust me, you won't be feeling sexy when you have constant diarrhea or nausea.

4. Meds. You know..... I can tell you what I think... but it doesn't carry any real weight. Go read the research. You have a golden opportunity to impact your disease progression. You can choose to piss it away by not starting meds or you can take meds.... your choice. Either way it takes a long damn time for HIV to bug you. Most of the research I've read suggests that HIV is a gradual drag on the immune system over time and wears it out. So, if you think about a car for a moment.... you know the tire will eventually wear out. If it goes flat, blows out, or delaminates is up in the air. But it will eventually fail. If you have a nail in it, you know it will happen sooner. if you have something rubbing on it, you know it will happen sooner. Your body is a tire, HIV is a stick rubbing on it. Meds are a way to pull the stick off and stop the wear. It's that simple. How far down do you want to wear your immune system before you pull the bug off?

5. 1,000 CD4 is generally regarded as normal. So, 495 is about 50% in terms of immune function..... 250 is about 25%. Is this scientific? no. It's just how I think of it. Which frankly is about as good as anything else you are going to read on here. This site is primarily opinions. Some are more qualified then others. So the recommendation last year was to start meds under 350 and mandatory under 250. I understand it's moved up, but I'm not paying close attention because my numbers are under 350.... so I'm in the "must start" category and waiting for permission to safely start.

6. Quack-begone. yea that's what I call it. There are those that have a variety of non-scientific beliefs about wellness. That's the nicest way I can put it. You are at a point we all go through where you are worried. Many of the "wellness theories" will compete for your endorsement with modern medicine. I would urge you to think very carefully about any "wellness theory" that seems too good to be true. There is presently no cure for HIV only treatment. You will periodically run into wellness theories on this site in a variety of forms that are tolerated or banned. Just apply the "too good to be true" test and see what the old timers are doing.

7. Herd theory. Where the herd goes is generally the right place to be. Studies have shown that crowds are incredibly good at making decisions. It's better to be one of the crowd then the wierdo. Just trust me on this. Medicine does it's best when it is repeititve. Being unique is generally not a good position to be in.

Lastly, based on what I know of your situation I think your doctor made a sound recommendation. The best opportunity to limit damage caused by HIV is early in the disease progression. Viral reservoirs are formed during the first 2 to 3 months of infection based on what I understand. You have good insurance, you are early in the disease, you are still in the rebound phase of your initial (primary) infection. Meds are a good viable option in this instance.

I was in your shoes 2.5 years ago and at the time thought holding out was better. I'm not sure I would do that if I had it to do over. If I had the choice, I would have gone on meds when my doc saw me and said "You have primary HIV infection... come back for a test in a month." I did not have insurance at the time and did not have a choice.

You of course are free to make the choice that best suits you. TALK to your doctor. If he or she won't listen, find one that will.

Think about fighting HIV the way you would play chess. Slow, strategic moves with a specific outcome in mind. It is not a knee jerk, shoot-em up game that will be over in 30 days. My personal goal with HIV is to enjoy each day of my life, have fun, and live long enough to let something else be the problem that ends my game.

At the end of all this, remember, I'm not a doctor.... my advice is nothing more than my thoughts and opinions.

Logged

Don't obsess over the wrong things. Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion. It's about getting out there and enjoying it. I am a person with HIV - not the other way around.

As for my "percentage"...I have no freaking idea what that is, and it hasn't been mentioned to me.

definitely always get copies of your labs and start a file at home.

A brief summary would be much appreciated .

see the labs discussions in the lessons section above

As I understand it, CD4 levels plummer during initial HIV infection, sharply rebound, plateau and then eventually fall. Is it reasonable to hope that 2 months after my conversion (the time of the test) my CD4 levels might still be rebounding,

Thanks for taking us back to point Matty. And I agree, it would be way too early to start meds.

Anyone else have any ideas for how I can search out a new docs option fast? Without burning bridges? I asked for a copy of my labs from my doc. I don't think he gave them to me. Don't wanna repeat them. Also, does anyone know why its taking so freaking long to get my genotype back? Six weeks is f***ing absurd! It also took forever to get in to see this guy.

1. It's normal to want a copy of your labs. Just call the office and have them mail or fax it. You can also offer to pick them up. You are entitled (under law) to a copy of anything in any medical record of yours. If asked, just tell them you wanted to study them. They are complicated.

2. Labs: Get used to it sweety. At a minimum every 3 months is normal. More often in some instances.

3. Tests: Some tests are not like opening a can of soda and dipping a q-tip in them. Some require culturing, and some are very very specialized and only a handful of labs do them. Resistance testing requires both expertise and time. It's not like they can pull out your HIV and ask it what it doesn't like. They have to culture it, analyze it, and only a few places do this.

4. Tests part 2: Some test are so specialized that they require very expensive equipment and specially trained technicians. Both of these things are expensive. It makes better business sense to do them in one or two places and fly the samples in (fedex) so they can get very good at doing these tests. Viral Load, Tropism, and Resistance are 3 I can think of.

5. Tests part 3: Some tests are also patented (tropism aka Monogram Trofile Assay) and thus for monetary reasons only a couple places are allowed to run them.

6. Timeline: Day 1: Blood Draw.Day 1: Workerbee spins down your blood to get rid of the serum and keep only the part that they want to test.Day 1: Vials are prepped for shipment. Some go to local labs for basic bloodwork aka CBC or Complete Blood Count. Others go elsewhere for specialized tests.Day 2: CBC done. Others in transit. cd 4 usually done in CBC (cd 4 is a type of blood cell)Day 3: Lab starts tests, results returned on first bloodwork.time goes on for completion.Day 10: viral load done, Day 11-17 Doc's office has to receive results, post them to your chart, call you, and bring you in to discuss them. These things take time......

This is why it takes 2 to 3 weeks to have blood work done and results returned. Resistance testing probably involves time to culture.... just roll with it. Better yet, go get laid.

Logged

Don't obsess over the wrong things. Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion. It's about getting out there and enjoying it. I am a person with HIV - not the other way around.

From what I can infer though, your cd4 levels didn't "rebound", they have stayed high, mid five hundred, since your infection. How long do you think it was between your infection and your first test results?

1. Calm the f*ck down. Chances are better that you are normal then not. Nobody becomes poz and plummets off a cliff. It just doesn't work that way. Stop watching so many lifetime movies and hollywood dramas. HIV is not attack of the THING.

2. Please do not second guess your doctor on the basis of this forum. If you legitemately do not want to start meds, gather info from here and have a conversation. I'm not a doc, but I can imagine nothing is more annoying than a non-compliant patient.

3. Resistance. Atripla is a well tolerated, very effective med. In the odd chance that it doesn't work for you your next test will show no reduction in viral load at which point it's time to try something else. HIV meds are sort of like a family reunion where you have to dance with one of your aunts. Each aunt has something peculiar about her.... so one has gas, one has arthritis, one talks constantly...etc you get the idea? None of them are ideal, but you've gotta do your part. Atripla is your Aunt with the fewest bad habits. It doesn't glue your ass to the toilet, cause you to be photosensitive, zap your appetite, evaporate your sex drive, or any of the other nasty habits that some of the drugs have. Trust me, you won't be feeling sexy when you have constant diarrhea or nausea.

4. Meds. You know..... I can tell you what I think... but it doesn't carry any real weight. Go read the research. You have a golden opportunity to impact your disease progression. You can choose to piss it away by not starting meds or you can take meds.... your choice. Either way it takes a long damn time for HIV to bug you. Most of the research I've read suggests that HIV is a gradual drag on the immune system over time and wears it out. So, if you think about a car for a moment.... you know the tire will eventually wear out. If it goes flat, blows out, or delaminates is up in the air. But it will eventually fail. If you have a nail in it, you know it will happen sooner. if you have something rubbing on it, you know it will happen sooner. Your body is a tire, HIV is a stick rubbing on it. Meds are a way to pull the stick off and stop the wear. It's that simple. How far down do you want to wear your immune system before you pull the bug off?

5. 1,000 CD4 is generally regarded as normal. So, 495 is about 50% in terms of immune function..... 250 is about 25%. Is this scientific? no. It's just how I think of it. Which frankly is about as good as anything else you are going to read on here. This site is primarily opinions. Some are more qualified then others. So the recommendation last year was to start meds under 350 and mandatory under 250. I understand it's moved up, but I'm not paying close attention because my numbers are under 350.... so I'm in the "must start" category and waiting for permission to safely start.

6. Quack-begone. yea that's what I call it. There are those that have a variety of non-scientific beliefs about wellness. That's the nicest way I can put it. You are at a point we all go through where you are worried. Many of the "wellness theories" will compete for your endorsement with modern medicine. I would urge you to think very carefully about any "wellness theory" that seems too good to be true. There is presently no cure for HIV only treatment. You will periodically run into wellness theories on this site in a variety of forms that are tolerated or banned. Just apply the "too good to be true" test and see what the old timers are doing.

7. Herd theory. Where the herd goes is generally the right place to be. Studies have shown that crowds are incredibly good at making decisions. It's better to be one of the crowd then the wierdo. Just trust me on this. Medicine does it's best when it is repeititve. Being unique is generally not a good position to be in.

Lastly, based on what I know of your situation I think your doctor made a sound recommendation. The best opportunity to limit damage caused by HIV is early in the disease progression. Viral reservoirs are formed during the first 2 to 3 months of infection based on what I understand. You have good insurance, you are early in the disease, you are still in the rebound phase of your initial (primary) infection. Meds are a good viable option in this instance.

I was in your shoes 2.5 years ago and at the time thought holding out was better. I'm not sure I would do that if I had it to do over. If I had the choice, I would have gone on meds when my doc saw me and said "You have primary HIV infection... come back for a test in a month." I did not have insurance at the time and did not have a choice.

You of course are free to make the choice that best suits you. TALK to your doctor. If he or she won't listen, find one that will.

Think about fighting HIV the way you would play chess. Slow, strategic moves with a specific outcome in mind. It is not a knee jerk, shoot-em up game that will be over in 30 days. My personal goal with HIV is to enjoy each day of my life, have fun, and live long enough to let something else be the problem that ends my game.

At the end of all this, remember, I'm not a doctor.... my advice is nothing more than my thoughts and opinions.

1) This whole thing has failed to work out as expected. One more catastrophe wouldn't be out of the ordinary. Thanks for the reassurance though

2) As a patient, I can't imagine anything is more annoying than a dictatorial doc. Fortunantly, mine is not. I'm not refusing to comply so much as I am slightly adjusting a suggestion in favor of terms which I find more agreeable.

3) My concern about resistnace is that if ONE of the components of it is worthless, my virus will quickly develop resistance to the other two components, which will limit the drugs available to me over the long run. For me, it seems preferable to make damn sure resitance won't be an issue than to experience the presumed benefits of a single added month of treatment. By MOST accounts, I'm out of the magic "early treatment" window, which my doc defined as the first "six weeks".

4) I'd decided that once I showed a prolonged drop below 500, I'd start. These numbers are WAY below 500, so the need to see a second number isn't so pronounced. Normally, I'd start now, but im deeply uncomfortable with starting before I get my resistnace test back. I'd also like to see my numbers once more, just to ensure that i'm not at the low point of a "bounce". I have no doubt that HIV is a drag on my system, and am DEEPLY concerned about its effects on my body. I am also concerned about winding up on salvage therapy as my first course of treatment, a prospect which is more likely if I start gulping meds without seeing my resistance.

5) What are you doing to protect your liver? I'm curious about protecting mine.

6) Hey, i'm not pretending that self-care is a substitute for HAART, but I cannot believe that NOTHIGN i do for myself affects my immune system.

7) No desire to be an outlier here, but I've got a hardon to make sure meds aren't just gonna make my virus stronger.

Just looked up the definition for the "CD4 %". He never mentioned it. Do I just call and ask it or is this gonna have to be something I pick up in person. I don't have a fax machine, so they can't fax it.

From what I can infer though, your cd4 levels didn't "rebound", they have stayed high, mid five hundred, since your infection. How long do you think it was between your infection and your first test results?

Okay, I'm gonna answer this to the best of my abilities, but please take it with a shaker of salt. I'm not a doc and I don't have anything more than what I've read and my own hunches. That said, I'm usually right on or not far away. I do well in grenades and nuclear war, although I haven't practiced the first in years.....

CD4's are just another cell in the body. Like every cell they are constantly being replaced. Unlike every other cell they seem to be the "alarm" system in the body. Essentially they attach to bad nasties and flag down the bad guys who come in and kill the offending objects. I seem to recall the killer cells are cd8's. All the CD sells do something in the immune system.

So, in HIV infection, you lose most of your CD4's. they are infected by HIV, replicated in, and blown up (literally). So during the initial infection, you lose most of your CD4's or at the very least suffer a big drop. Your viral load goes crazy.... viral load of a million is not uncommon. It's called viremia. I know you are smart so google it if you want the explanation of viremia. As your body catches on it begins to fight back. Just like with any other virus it does fever, chills, nausea etc. It works to a certain degree. Your immune system copes with HIV to a certain extent and HIV continues to be a drag on your system.

You can think of HIV as a bad pet monkey that alternates between sticking a finger in the cake, clawing the furniture, pissing the carpet, and unlocking the doors and windows so that other animals can come into play. That's a bit colorful, but not far off.

As you progress from acute (primary) hiv to chronic HIV infection a balance comes into play. This goes back and forth and eventually equalizes. As such your viral load comes down, your CD4s come up, and so yes.... your body will adjust. it's a living system.

When you add meds to the mix they keep your HIV Monkey in it's cage. It can't get out and terrorize the house, so your house begins to be more normal. CD4 cells take time to develop and your body makes less of them as you age. So it's not instant.... again patience grasshopper. Rome wasn't built in a day and HIV won't behave tomorrow either.

It's important to "do the math" to keep this in perspective. At the moment your blood was drawn, you had a viral load of X per millleter (ml) of blood. The average body has 5.5 liters or 5500 ml of blood. That means if your viral load is 40,000 then your true load of virus in your body is approximately 40,000 x 5,500. or 55x 4,000,00 which is the same as 5.5 x 40,000,000 which is around 220,000,000 copies of the virus. It turns out that when you are undetectable the math is about 137,000 copies per body is the same as <40/ml. Now this is even messier when you have a viral load of say 250,000/ml. I'm not gonna do the math here.

Now, you probably zeroed in on "point in time" which was not an accident. Everything affects your immune system. Got a sniffle? CD4's will take a slip. Catch the flu, they take a dive. Pissed off and stressed out? they go and hide. You starting to see a pattern here? When you have fewer CD4's you are more susceptible to infections..... under 250 and you are VERY susceptible.

So, as you get your virus under control rebound takes time.

so back to my story....

diagnosis, effectively 30 Nov 2007. Likely infection 7 Nov 2007. 30 Nov 2007 indeterminate western blot. By Christmas I was officially poz. Bloodwork early Jan 2008. My viral load is keen on about 30,000. My cd4's were 390 or so and slipped to about 275 by the summer when I started meds. They rebounded over 18 months to 450. viral load went undetectable within 30 days and stayed there until 30 days after I stopped meds. NOTE: the stayed there part is abnormal and related to the drug I was on, which is not on the market. Normally if you stop meds you will rebound within a week. Vicriviroc is different, it binds tightly to your CD4s and takes a couple weeks to wear off. Sadly, I don't think it will make it to market which ought to be criminal.

Logged

Don't obsess over the wrong things. Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion. It's about getting out there and enjoying it. I am a person with HIV - not the other way around.

Wow, I can't believe your doc would give you drugs so fast with limited information...

If I remember correctly you and I are newbies to this around the same time, I tested neg in June of 2009 and poz in early June of 2010. I did my first labs 12 days ago, it only took 1 week to get them back. CD4 were 307 - VL 9500 - 18%. The numbers sort of freaked me out so I went in the same day and had them draw more blood and start my genotype. (They tell me that will take two weeks, so I've got at least another week to wait for that.) Like many have said here they want to do at least one more set of labs before we do anything because they don't really have any data to know where I started at and I may be at my "low".

Like you I had made up my mind that if my numbers were below 500 I'd want to start meds, but since they are below 350 I'm for sure going to do it. Sure 307 might be might be my low point but even if they bounce back up by 200 it would still put me at the 500 I was ready to commit.

If it were me I'd wait for another set of labs and the genotype results... Seriously your numbers rock compared to mine and I'm going to wait for another set before I jump in. We're not going to suddenly get sick and die, wait another few weeks and make sure Artipla is the right drug for your bug.

I'm sure meds are in my very near future but I want to know any resistance issues before I start popping pills.

1) This whole thing has failed to work out as expected. One more catastrophe wouldn't be out of the ordinary. Thanks for the reassurance though

2) As a patient, I can't imagine anything is more annoying than a dictatorial doc. Fortunantly, mine is not. I'm not refusing to comply so much as I am slightly adjusting a suggestion in favor of terms which I find more agreeable.

3) My concern about resistnace is that if ONE of the components of it is worthless, my virus will quickly develop resistance to the other two components, which will limit the drugs available to me over the long run. For me, it seems preferable to make damn sure resitance won't be an issue than to experience the presumed benefits of a single added month of treatment. By MOST accounts, I'm out of the magic "early treatment" window, which my doc defined as the first "six weeks".

4) I'd decided that once I showed a prolonged drop below 500, I'd start. These numbers are WAY below 500, so the need to see a second number isn't so pronounced. Normally, I'd start now, but im deeply uncomfortable with starting before I get my resistnace test back. I'd also like to see my numbers once more, just to ensure that i'm not at the low point of a "bounce". I have no doubt that HIV is a drag on my system, and am DEEPLY concerned about its effects on my body. I am also concerned about winding up on salvage therapy as my first course of treatment, a prospect which is more likely if I start gulping meds without seeing my resistance.

5) What are you doing to protect your liver? I'm curious about protecting mine.

6) Hey, i'm not pretending that self-care is a substitute for HAART, but I cannot believe that NOTHIGN i do for myself affects my immune system.

7) No desire to be an outlier here, but I've got a hardon to make sure meds aren't just gonna make my virus stronger.

He said the biggie was the first six weeks...

All good concerns....

nothing wrong with holding off... I just want to make sure that if someone tells you that jumping off cliffs will cure HIV you don't head for the hills. Btw it does, it just has a bad outcome on the rest of your life.

Realistically, modern medicine treats infection crudely. Imagine sitting on your porch/deck/balcony and throwing hand grenades at ant hills in the yard. Does it get rid of them? Yes. but damn if it doesn't make a mess and tear up the yard.

My point here is not to obsess over the tests, side effects, and consequences. People were fine on meds before resistance testing.

One of the key concepts in medicine is a benefits test. It basically goes like does the treatment produce more benefit than the hassle compared with doing nothing? So if treating you gives you the shits (diahhrea) but saves your life, then it's worth the hassle compared to death. Consequently for Atripla, the question is: Does giving you vivid wierd dreams and the occassional grogginess outweigh no treatment or treatment with less tolerable side effects? Btw, less tolerable side effects are multiple pills, multiple times per day, that cause appetite loss, surprise no-warning shits (as in in your pants thank you), etc etc etc. Yes, some of the other meds are nasty, and all the current meds look like angels compared to what they had in 1993. In 1993 AZT which is a nasty drug at high doses looked saint-like when you put it next to a coffin. That was the choice, nasty drug or death.

HIV is exceptionally good at dealing with one drug. It's not good at dealing with 2 or 3. the standard is 3.

The drug study I was in was a 2 drug cocktail.... it worked very well. That's not the standard.

Drug effectiveness and resistance is sort of like a water leak. If your roof has a drip, and it goes on every time it rains for a month, chances are you don't throw out the whole carpet. HIV doesn't have the benefit of playing a "draw 4" on you body (think UNO). It simply gets around some of the meds.

Trending is comparing the data from 2 or more points to predict a future point. You can estimate the first point (normal) and compare it to now (so-so) to trend that starting meds makes sense.

Doctors are like interior designers. Each one has his own philosophy..... not all of them are great, but most give a damn and try hard. You haven't said anything so far about your doc that would make me stop a friend from going to him. He didn't dunk you under water to see if you are a witch. He didn't shake a dead chicken at you..... He ran some tests and wrote you a scrip.

Anyhow..... does this help?

Lastly, you asked about my liver. This is where your mileage will hopefully be different. My liver numbers are up right now. We don't know exactly why and we are playing hide-n-seek and the waiting game at the same time. It's why I'm not on meds. I discussed it with my doc and decided that I am okay HIV wise and wanted to figure out my liver before adding meds to it. We don't know why my liver is misbehaving. We have some ideas.... and my bloodwork says it's not where it should be and where it was prior to meds. I have something called Fatty Liver Disease which is essentially fat in my liver. It's a metabolic issue and may be due to one of the meds I took. It might just be that I drank Soda and hated water...... or that I eat well.... or that I sucked too much cock. The important thing is we are monitoring it and managing it. It could be something more serious like a Gall Bladder problem. We'll figure it out. Btw, I did my quarterly follow up in March. Since then I've been doing monthly CBC's to look at my liver enzymes. they cost me about $11/mo which is well worth it to me. You only get one liver.

I will get my bloodwork results on Tue and I antiicipate starting meds shortly afterwords.

Logged

Don't obsess over the wrong things. Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion. It's about getting out there and enjoying it. I am a person with HIV - not the other way around.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Just looked up the definition for the "CD4 %". He never mentioned it. Do I just call and ask it or is this gonna have to be something I pick up in person. I don't have a fax machine, so they can't fax it.

You can divide the CD8 by the CD4 (or the other way around) to figure it out. If you search on here you can find a few discussions on it.

the call should go something like this:

dial the numberclinic lady: Thank you for calling Dr. Pillpopper's Office, can I help you?You: Hi, this is mickey mouse. How are you today?CL: I'm great, how can I help you?U: I wanted to get a copy of my bloodwork from my last test. I was in a week ago and forgot to ask for a copy. How do I do this?CL: Well, you'll need to come in and sign over your first born, release us from liability, and then I'll take care of it for you.U: Great. when's a good time for me to stop by?CL: Ideally right after hell freezes over, but any other time is fine.U: Thanks so much. If I have questions about the numbers when's a good time to call the nurse?CL: Well, anytime is fine. She's really cranky on Mondays and Friday afternoons. But she reads the paper during the afternoons on wednesdays.u: Great I'll see you later. You have been a big help to me.

ALWAYS ALWAYS ALWAYS ( and did I mention ALWAYS) go out of your way to make the receptionist and nurse feel appreciated. They are the gatekeepers who determine if you get in when the schedule is full and you have a spot on your ass and a date coming up. They also handle co-pays, paperwork, and typically do your shots and bloodwork. As they old saying goes, Honey catches more flies then vinegar. Remember, they are people and they get tired of nasty bitter pissed off queens parading past their desk and treating them like some sort of obstacle. They have far more power then you probably realize.

Same thing applies by the way in Sales and Job Hunting. Always treat the secretary like the CEO. After all, she decides what calls get through, and what calls don't.

In my company we have a "employee" named "Susan." When obnoxious, annoying, self-absorbed prick tease sales people call, "Susan" is who they need to talk to. She makes all the decisions from toilet paper to office supplies, to internet advertising, penile enhancement, you name it. She also is always out playing golf, at lunch, on vacation, or on another call. Amusingly she doesn't exist. We just found that saying "no" always picked a fight, so we invented Susan. Everyone here is in on the game and we all play it well. In fact we are going to have a girl-friend record a voicemail for Susan. I'll program the system to take the call and then delete the message.

When I interview, I always have candidates meet with my other employees. All it takes is one "he was a prick" from any employee to scratch someone off the list. I don't need any pricks at work..... or people who blow smoke up my ass and backstab my other employees.

I'm pretty sure Doctor's feel the same way when it comes to patients. I find most of the time that the nurse and receptionist have better luck getting things done for me anyhow. The doctor is busy!

Get the idea?

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Don't obsess over the wrong things. Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion. It's about getting out there and enjoying it. I am a person with HIV - not the other way around.

I'm half asleep at the moment but I just wanted to say that while I asked about your percentage--it's a helpful bit of additional information--it probably isn't one of the most important things. That is the impression I get, at least, from the fact that nobody even mentioned it to me during the whole first three years of regular lab tests and doctor visits. If you look down at my "history" below, you can see that in May of '09 I had unremarkable VL and CD4s, but my doctor said she was worried about the drop in my percentage. I'd never even heard of percentage and she explained what it was about. I asked for all the percentages from previous labs and she gave them to me. Then I noticed that I'd had the same identical 25% at my very first lab test, and when she saw that she said then there was probably nothing to worry about. The way the computers work at the clinic, I think she sees only the latest results and the ones just before, so seeing a drop from 31 to 25 looked bad out of context.

So, if your doctor hasn't mentioned it to you, and if my doctor didn't mention it to me for three years, it's probably because it's not among the most important things, and I'm sorry I asked about it and gave you one more thing to worry about!

I'm not sure if I made it clear last time, but the point of my story about how many problems I had during the year after I got infected was, that I think it can take quite a while for the system to bounce back. That is, I know that it took a year for my actual health to bounce back, so I'm guessing that it could take that long for numbers to do so as well. I would certainly give it at least six months and three sets of labs, but that's just me.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Nestor, the CD4% is a more reliable number than the absolute CD4 as it is a more stable number. It's definitely one to track when you're not on meds!

So, why did they wait three years to inform me of its existence? Were they being negligent? Or, to put it more charitably, do they give information only on a need-to-know basis? It makes one wonder what else one hasn't been told.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

So, why did they wait three years to inform me of its existence? Were they being negligent? Or, to put it more charitably, do they give information only on a need-to-know basis? It makes one wonder what else one hasn't been told.

Another way to approach this is to stop waiting for your doctor to "inform" you of things. I ask for a copy of my lab report each visit and never hesitate to ask questions if I see something that doesn't make sense to me. I also will question my doctor -- in fact, after 5 yrs together he routinely asks for my thoughts on things. Now, as many know, I do have a medical background, so that helps -- but I also have approached my ID doctor as my PARTNER in health from the get-go. He's got more experience and knowledge than I, but that doesn't give him the last word. He wanted to put me on one regimen, I didn't like what he had in mind so we discussed and I went on a different one.

Bottom-line -- if you don't act like a partner in the relationship, you might not get treated like one.

So, why did they wait three years to inform me of its existence? Were they being negligent? Or, to put it more charitably, do they give information only on a need-to-know basis? It makes one wonder what else one hasn't been told.

Hi Nestor -That is a great question... and Ann's response was a great response. I guess docs got so use to the focus on increasing CD4s and decreasing VL that notifying people of their cd4% took a back seat. Of course, it could be like the magician that wants to keep the secret of the magic "up his sleeve" (although I doubt it)....

My doc was (and still seems to be) surprised when I remark about my cd4 % and seem to shovel to the back seat the cd4 count. She also likes the fact that I ask for copies of my labs each time.

I have been told by her and several other docs now that % is much better to go off of.... cd4 numbers can fluctuate by many points just in the course of a day and depending on time of blood draw, etc.

From what I can infer though, your cd4 levels didn't "rebound", they have stayed high, mid five hundred, since your infection. How long do you think it was between your infection and your first test results?

that's the funny thing about how the same virus affects all of us differently. timewise, i got infected at some point between 1-18 months before my diagnosis. i didn't really have much of the classicly described seroconversion illness that many others appeared to. what my number trend thus far does show is that while cd4s have been relatively stable and vl has fluctuated, my cd4% has been on a slow, gradual decline over the past year since diagnosis. of course, that equates into elevated cd8s and a skewed cd4:cd8 ratio

So, why did they wait three years to inform me of its existence? Were they being negligent? Or, to put it more charitably, do they give information only on a need-to-know basis? It makes one wonder what else one hasn't been told.

nestor, i'm surprised that with all the hiv related research that you've done that you never knew that about cd4%. do you ask your doc for copies of your labs?...cd4% should be right on the report. in part, that's why i had specifically suggested that all factors need to be considered in considering the meds game issues we discussed in another thread. follow your own advice, brother...take initiative. i'm glad that you now know the importance of it.

It's most likely because they assumed you were just a stupid patient who didn't have a clue what the CD4% meant. Have you not noticed they tend to treat us like idiots?

I'm always amazed by the number of folks here who state that their doctors haven't discussed this number. I've gone through four HIV specialists over the years and every last one of them routinely discussed this number. In fact, they made a point of emphasizing that if the % was stable or increased we could discount any downward fluctuation in the absolute number.

I'm always amazed by the number of folks here who state that their doctors haven't discussed this number. I've gone through four HIV specialists over the years and every last one of them routinely discussed this number. In fact, they made a point of emphasizing that if the % was stable or increased we could discount any downward fluctuation in the absolute number.

I know. Mine has addressed the % since day one. She is very proud of my rebound from a dreadful 12% to almost 40% in less than a year. Where are these girls finding these HIV specialists? Craig's List?

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Hell, the first hiv specialist I saw didn't want to give me ANY of my numbers. He said "you don't need to know". Needless to say, I never went back to him. That's why I go all the way to Liverpool as that jerk is the only one available on the Rock.

My current hiv specialist always gives me my percentage, although when I see one of the registrars instead, some of them want to know why I want to know. I think it's because they don't understand the significance themselves.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts